School of Psychology, Massey University, Palmerston North, New Zealand.
Sleep/Wake Research Centre, School of Health Sciences, Massey University, Wellington, New Zealand.
Dementia (London). 2023 Jul;22(5):1038-1056. doi: 10.1177/14713012231166744. Epub 2023 Mar 30.
Dementia-related sleep changes can lead to disruptions among families living with dementia which can jeopardise carers' wellbeing and ability to provide support. This research explores and represents the sleep of family caregivers across the trajectory of caring, before, during, and after the key period of their care recipient moving into residential care. The focus of this paper is viewing dementia caregiving as a trajectory, characterised by care needs which change over time. Semi-structured interviews were conducted with 20 carers whose family member with dementia had transitioned into residential care within the prior 2 years. Themes constructed from these interviews indicated that sleep was linked to earlier life course patterns as well as to significant moments of transition in the caregiving journey. As dementia progressed, carers' sleep progressively worsened in relation to the less predictable nature of dementia-symptoms, difficulty maintaining routines, and constant responsibilities creating a state of high alert. Carers attempted to facilitate better sleep and wellbeing for their family member, often sacrificing their own self-care. Around the care transition period, some cares reported not realising how sleep deprived they were; for others the busy momentum continued. After the transition, many carers acknowledged that they were exhausted, although many had not realised this while providing home-based care. Post-transition, many carers reported ongoing sleep disruptions associated with poor sleep habits established whilst caring, insomnia or nightmares and grief. Carers were optimistic that their sleep would improve with time and many were enjoying sleeping according to their own preferences. The sleep experience of family carers is unique and includes tensions between their essential need for sleep and the experience of care as self-sacrifice. Findings have implications for timely support and interventions for families living with dementia.
与痴呆相关的睡眠变化会导致与痴呆症患者一起生活的家庭出现混乱，从而危及照顾者的健康和提供支持的能力。这项研究探讨并代表了照顾者在照顾者接受者进入养老院之前、期间和之后的关键时期的整个照顾轨迹中的睡眠。本文的重点是将痴呆症护理视为一个轨迹，其特点是随着时间的推移，护理需求会发生变化。对 20 名在过去 2 年内其患有痴呆症的家庭成员已过渡到养老院的护理者进行了半结构化访谈。从这些访谈中构建的主题表明，睡眠与早期的生活轨迹模式以及护理旅程中的重要过渡时刻有关。随着痴呆症的进展，由于痴呆症症状的不可预测性、维持日常生活的困难以及持续的责任，使护理者处于高度警惕状态，导致他们的睡眠逐渐恶化。护理者试图为其家庭成员创造更好的睡眠和幸福感，往往牺牲自己的自我保健。在护理过渡期间，一些护理者表示没有意识到自己睡眠不足；对于其他人来说，忙碌的势头仍在继续。过渡后，许多护理者承认他们已经筋疲力尽，尽管许多人在提供家庭护理时没有意识到这一点。过渡后，许多护理者报告说他们的睡眠受到持续干扰，与护理期间养成的不良睡眠习惯、失眠或噩梦和悲伤有关。护理者乐观地认为，随着时间的推移，他们的睡眠会改善，许多人根据自己的喜好享受睡眠。家庭护理者的睡眠体验是独特的，包括他们对睡眠的基本需求与自我牺牲的护理体验之间的紧张关系。研究结果对为患有痴呆症的家庭提供及时的支持和干预措施具有重要意义。
